Tuesday, February 26, 2013

This post is a rant....sorry

2012.....what a year.It was one of my hardest years, hands down. I hate to be vague on the ole blog, cuz boring, right? But you'll just have to trust me when I say, it sucked. Hence the minimal postings on the blog. I just couldn't get it together. Too much was going on.

At the end of every year we have to deal with flu season, ER trips and the holidays. It makes for a stressful time. I think my family was more sick this year then we have ever been. Mainly me. I have been terribly sick for too long. I am just now coming out of it.

Then comes the first of the year, I hold my breath, wondering what is going to change on our health insurance. Every year it goes up and changes are made. This year, we had a DRASTIC leap in the cost of Davy's nightly shot. Like I gulped and put it on my credit card, drastic. It's so sad to me. I know there are so many people in the same boat as us. I mean, If a person can die with out a certain medication, shouldn't that be the one medication that's free? Not to mention the overall premium went up another $200. Health care is our largest monthly bill by far and that is not right.

Could someone please explain the whole Obama care to me? Is it even in effect? Who is it helping? I think if the President could just meet Davy, he would maybe put her on his insurance plan so she could be fully covered. I bet his health insurance is awesome.

I realize i never talk politics to you, that's because I hate politics. So I am not up for a political debate here, I'm just angry. OK....enough of this crap, I'm gonna turn this around......

You know the "when life hands you lemons" saying, well I was handed a a whole grove it seems. So it's now time to mass produce this lemonade stuff. Maybe i can sell it and pay for my Insurance?

Not to sound like a total brat, I must acknowledge the blessings that were giving to me this year as well. I know there were many.

First, my Davy is alive and well. We had a close call this year that will permanently be ingrained in my mind. I know that each day with Davy is a blessing, even when I am exhausted and she's being naughty. After having our little scare, I called up our dear cousin, Amelia, and said, we need family pictures asap. It's been too long and i don't want to regret not having pictures of my beautiful girl. So here are a couple(more like a ton) of her beautiful images she took.

Oh Max....

I am so glad i got this picture with my davygirl

Second, we bought a house!!! I didn't think it was going to happen. The market completely changed after we sold our house. We found a perfect home that was meant to be ours. The previous owners had a special needs son, so we made an instant connection and they chose us to buy their beautiful home. It is so nice to not live in a small box. we have plenty of room. I even have a closet that is empty......for now anyway. Once we get things all fixed up. I'll show you some before and after shots. but for now i leave you with these.

If you love Amelia's pictures as much as I do, go to her( blog )right now. She may be giving away a photo shoot for donations to help out a family you might know. Plus you can spend hours looking at her blog. It's candy for the eyes. I'll try not to be a stranger this time.

25 comments:

Some days/weeks/months/years are just like that. You made it! That's something! There's no on/off switch that you can smack to make it STAY better, of course, but the odds are just as good that it WILL be better.

I'm sure I'm not alone in admitting I've thought about you this year and hoped SO HARD that your family was...getting along. (You don't know me at all but I think you know my niece Susie D.)

Your family pictures are just beautiful. Congratulations on your new home! Thank you for sharing. (And double ditto on the health-care conundrum. *Fingers crossed*)

ruth: you're not alone in being confused about what the affordable care act does. a great, great resource is www.healthcare.gov. it outlines the upcoming changes instituted by the affordable care act and how it could impact you. go to http://www.healthcare.gov/law/information-for-you/families.html to see what it will do for families, and http://www.healthcare.gov/using-insurance/understanding/costs/index.html#Whattaxcreditsareavailable to learn about tax credits you can apply for if your insurance costs more than 9.5% your income.

Oh, Ruth, my heart goes out to you and your family. This past year has been the year from you-know-where for our family too. I've also had to take a permanent leave of absence from blogging as well as we try to sort out our sons' care. And yeah, the medical bills are not exactly helping the stress level of having a sick child, are they?Praying for peace and health for you and yours.

I am so glad to see a post from you tonight. Congratulations on the new house!! The family photos are gorgeous and the shot of you and Davy is amazing. You all will be in my prayers through 2013 - sending love and hope for rainbows ahead.

I am so glad to see a post from you tonight. Congratulations on the new house!! The family photos are gorgeous and the shot of you and Davy is amazing. You all will be in my prayers through 2013 - sending love and hope for rainbows ahead.

You're amazing! an inspiration to all of us! when you don't post i just pray for you because i know things must be rough--it's obvious you love posting and sharing so you not posting is a warning sign. obamacare is so ridiculous. davy and the kids look so great!!! my daughter had that same dress for christmas!!! i LOVE it beyond words. and your house is so cute. i can't wait to see what you do with it!!

Oh Ruth....I'm so sorry about your SUCKY year. I wish there was something specific I could do. Just know I continue to pray for your family. I do miss seeing you. Now on to the pictures. AMAZING. The color in them is stunning. Such good pictures. You have a beautiful family!!! Sending you love and hugs. I really do want to see your new place!!!

Beautiful pictures. Davy looks good.I am so sorry about the medical expenses. Yes, it sucks. I don't know what many are expected to do. I have friends in the same situations. Others in different situations that will never ever recover from mounting bills.Congratulations on your new home.

Oh my goodness! I just spent yesterday and today reading your family story. So much love documented here. I admire your love, spirit, and absolute joy you share about your children. Thank you for being so open and honest! You have a lovely family and seem to deserve every bit of miracle you have experienced with your sweet Davy girl.

I know exactly what you mean regarding the beginning of the year and dreading the increase in your insurance premium. My one year old son also has panhypopituitaryism and the expense of his hgh shots is very stressful. We have to go through the process of having his hgh prescription reviewed and denied/appealed/approved every six months by our insurance company. I understand how expensive hgh is for the insurance company and for our family, but do we really have to do this every six months? It isn't like his pituitary gland is going to miraculously start working and we all know what will happen if he doesn't have his shot every night. Even so, I remind myself to be thankful for the blessings of each day we have with him and to just deal with today's worries. There will always be worries about tomorrow, but I cannot devote today's time or energy to them. We prepare for tomorrow as best we can and then put those worries into storage.

So glad you're back...but so glad you did what you had to do and didn't blog when life was just too crazy. Hope 2013 is better for your fam. I LOVE the pictures and hip hip hooray for a house. (Or hip hop hooray if you're naughty by nature...) (...not cuz I hate 'cha.)

O.m.g! I love ALL of those pictures. amelia is just too good!!! I want some of those, and you KNOW i will be printing these out and putting them on a big picture on my binder! ;) I loooooove you guys and you need to come visit, we still have a while ;)

So nice to check back in and find a new post! I always enjoy your candid writing. And I agree, the healthcare system is sadly lacking when families struggle to keep loved ones healthy. I will pray that your lemon tree turns into a money tree and you and your family can breathe easily in 2013 !

I totally relate to the health insurance and the hilding of the breath...how much will it go up? Our deductible is WHAT?!? Oh, and the shot. When Emma was three, they were thinking of moving the med to another grade of prescription (if I even just made sense) and so I got so mad and I called the news station and they did a story on Emma! Also, complete congrats on your new home! So glad it's the perfect fit for you. We are in the midst of selling ours. It's sooo stressful. Emma's had two seizures on the stairs in one week...one where she almost fell down them. We seriously need to get out of here. Don't be a stranger if you need to vent. I know how it is. Jesslcrozier@gmail.com xoxo

I totally relate to the health insurance and the hilding of the breath...how much will it go up? Our deductible is WHAT?!? Oh, and the shot. When Emma was three, they were thinking of moving the med to another grade of prescription (if I even just made sense) and so I got so mad and I called the news station and they did a story on Emma! Also, complete congrats on your new home! So glad it's the perfect fit for you. We are in the midst of selling ours. It's sooo stressful. Emma's had two seizures on the stairs in one week...one where she almost fell down them. We seriously need to get out of here. Don't be a stranger if you need to vent. I know how it is. Jesslcrozier@gmail.com xoxo

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Davy's medical History

I am "the mom" to 3 boys and a little girl. Through taking a microarray test, we found out that my Davy girl has a rare chromosome deletion. I have written this out in hopes to find others who have any similiar conditions.

Davy has a microdeletion of 1p31.1-1p31.3. She has panhypopituitarism, a cleft lip and palate, Congenital heart defects(asd, vsd, pda and had a CoArc). She had a surgery for malrotation of the intestines, and a g-tube put in to feed her. She has GERD with esophagitis dysphagia. She is on multiple medictions that need to be given round the clock. Three of those she will need for the rest of her life. To read about her journey start here.